Attn: Grace - This is my EBV story

I am 23 years old and was diagnosed with EBV in 1997. I was 17 at the time. This has been such a struggle, but I think that I have finally learned to deal with it. This is a long story, but in order for me to make my point, I have to go in to detail.

It started my Senior year of high school...August 1996. Until then I had always been very healthy. I only had chicken pox and strep throat once as a child. Something very traumatic happened to me in July 1996 and after that my life feel apart. I became very fatigued, weak, nervous, etc. My stomach hurt to touch it and I could only eat a few bites of food every few hours because I always felt full. My naturally dark complexion turned ghost white and I had horrible headaches that never went away. The dizziness always got to me and I had a hard time catching my breath. I refused to go to the doctor because I thought it was just stress from being a senior.

In February 1997, my symptoms were still getting worse and I had not seen a doctor yet. While walking in to school one day, a guy friend had to catch me as I began to pass out. i made it half way through that day and then left early. My mom ended up bringing me to the ER because I was so sick. They ran CT scans and all kinds of other tests, but never ran a blood test. They gave me a few pills for migraine headaches and told me nothing was really wong with me and to see my regular doc the next morning if I didn't feel better. Of course, when I woke up the next day I did not feel better and had my mom make an appointment. When I saw the doctor, he could not find anything wrong with me and decided to do bloodwork. He said he would call if he found anything bad and gave me an excuse for school for that day only and told me I could go back the next day. He called the next morning with the results of the blood work...they were good. He told me that something was very wrong and I needed to see a hematologist...he had made me an appointment with one for 2 weeks from that day.

My mom is a nurse and when she found out the results she knew that i could not wait 2 weeks. I lived in a very small down with not so bright doctors, so she took me to the ER at a good hospital 1 1/2 hours away. On the way there, my nose bleed constantly and still bled while I waited in the ER to be seen. I went in to see the ER doctor and when he touched my stomach he got a very puzzled look on his face. He told me that he was going to get the head of hematology. The hematologist was wonderful! She was very sweet and understanding and told me that I was a very sick person and it's a good thing I hadn't waited to be seen any longer because I would not have made it. Afte doing some bloodwork and Xrays, she came back in the room with bad news...I had 1 of 3 things, leukemia, lymphoma or mono. She said that I would be in the hospital for a while. the next week was hell. I went through numerous scans and had a bone marrow test, which was the worst thing I have ever been through in my life! They finally diagnosed me with EBV, but a very rare form of EBV. My spleen was emlarged to 10 times its normal size and my blood counts were dangerously low. I was in the hopital for 2 weeks and was out of school for 3 months.

I finally went back to school right before graduation and luckily I had wonderful teachers which allowed me to graduate even without having done all of the work. There was no medicine to make me better...it was a wait and see game. I saw y hematologist every week and had CT scans done every month to keep and eye on my blood and spleen.

In February 2000, my spleen was removed. It weighed 10 pounds when it came out....it should only weigh a few grams. I also had my gall bladder removed because my low blood counts had ruined it and caused gall stones. They removed my spleen because it had started getting larger and was keeping my blood counts down.

It has been almost 3 years since the surgery and I am still not cured, but I am in a better frame of mind. I have been married for 4 1/2 years and am trying to get pregnant. I work full time and am in school part time. When I have a child, i will quit my job and stay at home with my baby...I will also go to school full time. My blood counts have come up, although they will never again be normal. Due to the surgery, my platelets are high when they used to be so low. I have had numerous other problems arise since the diagnosis. Due to EBV, I also have CFS, FM, B12 def.(I have to have shots every other week), a stomach ulcer and hypothyroid. I am still tired 24 hours a day, 7 days a week, but I have learned to live with it. I see my hematologist every few months, and will have to for the rest of my life. My EBV is a very rare case...I have seen many other docs to get their opinions and they have all told me that they have never seen anything like this...even my doc, the one that diagnosed me so many years ago just does what her gut tells her. Thank God, because without her I would be dead.

My advice to you is to relax and get as much rest as possible. Don't sleep too much because that can sometimes make it worse. Just rest! Don't do things that require alot of energy. Eat a healthy diet and a get a little exercise. Take a multi vitamin. These things never really helped me. Luckily I have a great support system....they don't know how I feel, but they know that something is wrong. My husband gets a little frustrated sometimes, but onl because he knows that he can't do anything to make this go away. I have learned to live with my illness. I am no longer sleeping all the time and moaning about being sick. I do not feel like I am dying. I am as active as possible, but know when to take it easy. There is usually one week day every week when I come home from work and collapse because I am so exhausted. that 's the night that my husband cooks and cleans. On the weekends, I schedule activities according to how I feel...if I have extra energy, I'll go out...if the previous week has worn me out, I stay at home and rest. Just follow what your body tells you...it will always guide you in the right direction.

I hope that this helps a little. I'm sorry it was so long. I do know how you feel. I know that I will have this for the rest of my life and have learned to deal with it. It still gets me down sometimes, but not like it used to. I hope that yours is not as bad as this, but if it is, you will survive. This illness has made me a stronger a person, although I didn't think so for a while. I wish you all the best and hope things get better for you soon.